By S. Aakash Kishore

We often think about the way we want to live our lives—we set goals, make plans and identify future hopes. Yet, until we are faced with mortality we rarely consider what it means to die with dignity. Healthcare providers who treat elder populations must keep this question at the forefront of their work. More importantly, however, they must be ready for a broad spectrum of answers, especially when working with diverse patient populations such as elder transgender and gender non-conforming people of color.

While this population faces many barriers to health and well-being, providers may be better equipped to serve transgender people of color if they are prepared to understand their aging process through the patients’ unique perspectives. Not only are aging and dying meaningful components of a human development, but the values, milestones and rituals associated with these developmental stages vary across cultures.

Transgender people in the United States must often live their lives in the context of pervasive, systemic discrimination that puts them at risk for poor health outcomes and a diminished sense of well-being. While they face high rates of discrimination in employment, housing and healthcare throughout their lives, the effects of these problems are compounded with age.

Employment discrimination, which particularly affects black and Latino transgender individuals, impacts eligibility for health insurance, ability to afford secure housing and access to Social Security benefits later in life. Thus, early and middle adulthood unemployment, underemployment or employment outside the traditional labor force can have a cumulative impact down the line on the health, healthcare access and well-being of transgender people of color.

In addition to healthcare access issues from economic discrimination, transgender people also face significant barriers to effective healthcare that are likely compounded by the aging process. First, lack of exposure to transgender patients in general can hinder the provider’s ability to effectively provide care to this population. While this may often take the form of using the wrong name or pronoun with a patient, severe cases of abuse have also been reported, and these incidents of disrespect and mistreatment are often a result of the treatment team’s insufficient exposure to a transgender population.

Second, knowledge of the long-term impact of hormone treatment for transgender people is underdeveloped and research findings are mixed. Although several studies have documented earlier mortality and specific risk for cancers and cardiovascular health problems, others suggest no substantial difference between transgender individuals receiving hormone therapy and comparison groups. Furthermore, although racial health disparities in the United States are well documented, little is known about how hormone treatment impacts health risk across the lifespan for transgender people of diverse ethnic backgrounds. Limited study and mixed results leave health providers uninformed about screenings and follow-up care they should recommend to transgender patients as they age. To increase awareness of potential health risks and make screening recommendations for patients and providers, more research to specify these risks is needed.

The combination of poor cultural competence among health providers and limited knowledge of long-term risks of hormone therapy often results in patients avoiding regular health screenings. For instance, a transgender man who has transitioned from female to male by taking testosterone and undergoing a double-mastectomy may be unaware he remains at risk for breast cancer, as well as other forms of cancer. Lack of knowledge and the threat of mistreatment may cause this patient to avoid seeking necessary screenings, and discomfort may keep him from performing self-exams. As a result, it is unlikely problems will be detected until he is symptomatic, reducing his chances for a positive treatment outcome.

Many transgender elders experience such economic hardships and healthcare barriers in a tenuous social context. Transgender people must often renegotiate their relationships with family members, and transgender people of color may also experience this renegotiation with their ethnic communities of origin. Elder transgender people of color are therefore at higher risk for problems related to social isolation, such as greater incidence of depression and a lack of support in the event of physical injury or illness. This may be particularly acute for individuals who come from ethnic, family or personal cultures grounded in interdependence. In these cases, ruptures in family relations may prevent aging transgender individuals from accessing community resources and performing roles that are critical to well-being.

One aging transgender woman of color reports that although she has lost ties with her family of origin, she still anticipates needing to provide for her ‘adopted’ parents who are only a few years her elder. However, without the financial and social support of an extended family, she anticipates struggling with this caretaking role and fears she will also be without the care she needs as she ages.

More than a Sum of their Problems

By the time they reach late adulthood, many transgender people of color have severed ties with their family of origin, faced some form of employment or housing discrimination and encountered barriers within the healthcare system. The individual, interpersonal and institutional discrimination that transgender people of color face in their daily lives often prevents them from fulfilling the key adult milestones of secure housing, gainful employment and meaningful familial relationships, which affects not only their material conditions, but their psychological health and well being. Interventions must not merely attend to these problems, but also harness the communities’ resilience.

Within various transgender communities of color, there may be rituals, rites of passage and social roles that serve as developmental milestones and correspond with resilient psychosocial development later in life. It is beyond the scope of this article to explore these culturally bound milestones. However, both research and clinical practice with this population might benefit from an eco-cultural approach, which does not measure an individual’s success or failure to achieve developmental tasks based on external markers, but rather defines important achievements based on what the individual describes as most meaningful (click the following link for a discussion of culture and development).

Dying with Dignity

As research moves toward uncovering culturally bound developmental milestones for this vulnerable population of older adults, health practitioners can use a patient-centered care approach to uncover salient issues for their patients. A basic understanding of terminology can help practitioners feel more competent when caring for elder transgender patients of color, but this must be coupled with a willingness to ask relevant questions. Asking Do you have a cervix/prostate? rather than Are you biologically female/male? can be particularly helpful in healthcare settings where patients are already vulnerable (often literally stripped bare).

It may be helpful to ask Who do you consider family? rather than Are you married/do you have children? because the former question leaves room for a variety of family and support structures. Lastly, because transgender and gender non-conforming people are often mis-named or mis-pronouned post mortem, it is imperative that health practitioners engage transgender patients of color in conversations about cultural beliefs and individual wishes surrounding death and dying. These kinds of simple adjustments in language can make a profound shift toward honoring the lives of transgender patients of color in the healthcare setting, and assuring dignity and respect during the dying process.

S. Aakash Kishore is a doctoral student in clinical psychology at UCLA.